Looking Forward in Hepatitis C Treatment, With Trepidation

Each year at the Conference on Retroviruses and Opportunistic Infections (CROI), a unique panel convenes on the first day of the meeting. This event -- the Martin Delaney Panel -- highlights a critical issue that lies at the intersection between HIV clinical research and HIV advocacy.

At CROI 2014, the theme of the panel was "Hepatitis C: From Trials and Tribulations to Triumph." One of the panelists was Tracy Swan, Hepatitis/HIV Project Director at Treatment Action Group and a longtime, outspoken patient advocate on issues related to HIV/hepatitis C coinfection. Our correspondent Terri Wilder spoke with Swan shortly after the panel.

It feels like this year, 2014, is shaping up to be the year of hepatitis C. What are your thoughts about developments that are coming down the pipe, and what do you think about the challenges that are going to come with these new hepatitis C drugs?

It's funny. You keep seeing these trials with cure rates of 95% and 100%. And it's wonderful -- don't get me wrong -- but it's almost mind-numbing after a little while. You just think: How do you distinguish? Everything is well tolerated. What is going to be the best way to get things out there to people?

I think we really need screening programs. We need to identify more infected people. And we really need an infrastructure. So, as excited as I am about the drugs, and as grateful as I am to not have to keep talking to people about drugs that give them a lot of side effects and won't work very well ... Think about it: If the number of people with HIV quadrupled overnight and all the things we take for granted were stripped away -- the infrastructure, the funding, the programs, the case management, the services, and even the community; when so many people are undiagnosed, it's kind of hard to form a community -- if you strip that all away, you've got hepatitis C, on the downside.

Then, on the upside of things, you've got a cure.

I think 2014 is the year we bring those two together. But we have to figure out how to bring the cure to the people. And the drug prices are going to be a horrendous problem.

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Let's talk about screening. The U.S. Centers for Disease Control and Prevention [CDC] came out with its recommended age cohort screening. The New York State Department of Health implemented a rule, effective Jan. 1, that folks in a certain cohort be screened for hep C. It feels like people are trying to roll these rules out, maybe in reaction to these new drugs.

How effective do you think these kind of cohort-based screening programs are going to be?

They can't be less effective than what we had before. I think some of these are really beginning to pick people up. What concerns me is, there are so many people newly entering care because of the Affordable Care Act. They may be getting slammed with multiple diagnoses all at once, because they haven't been in health care and don't know why they're feeling so crummy.

There might be providers that now feel that they need to screen, but then don't know what to do with people once they have a positive antibody test. I still think it's much better to screen as a critical public health step.

But there are a few things. It should be tied to surveillance programs, so you could collect the data while you're providing services to people, or nested within them, somehow. Also, yes, the baby boomer cohort is an important group, but you keep seeing all these reports of high infection rates among young people who are injecting drugs. If you're telling doctors who are already feeling pretty overloaded to do one more thing, they're not going to step out of that and start saying, "Hmm. I wonder who else I should be looking at now?" if they're trying to squeeze five people into an hour.

The cohort that we're talking about is people born between 1945 and 1965. I would assume that data drove that decision. But your point is that we're still missing people.

Well, the data we have are limited. It's from the NHANES survey -- incarcerated and homeless people -- and other very high-prevalence populations were not included. So, (1) we have an underestimate for the whole population; and (2) I don't quite understand how the incidence went from 300,000 cases a year down to about 16,000 cases over a decade and a half.

There are some reasons. Crack: People stopped injecting and started smoking more. But I think nobody was really counting, and we never developed the health care infrastructure that we needed to really characterize and then begin to address this epidemic. We have a lot of assumptions. There could be way more people of every age out there with hepatitis C.

Earlier, you mentioned the Affordable Care Act [ACA]. What do you think is going to complicate ACA implementation and getting folks who have hep C on treatment and into care?

I'm a big fan of single-payer health care. I would have much rather seen a system like that. I think we have a collapsing health care system with people entering it who don't even know how to use it.

No one's saying, "Look: People probably aren't going to be that nice to you. They're going to demand all this information from you. You're going to have five minutes with the doctor. You might hear something scary." You're not having anyone say, "What's on your mind?" How do you ask these questions? "How can we make the most of this appointment?"

I think we really need some health care literacy training for people so they feel comfortable going to a medical doctor. And when they get a diagnosis, whatever it is, they feel more like they have some control over what their next steps are. Hepatitis C has last-on-the-list syndrome. It doesn't progress quickly. "I don't have to deal with it right away." Treatment's too yucky. Treatment's too expensive.

Hopefully, the new drugs will really push the envelope, and people who need to be treated and cured will be. But it's not really clear how that's going to play out.

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